Parenting developmentally disabled children will always be a special challenge. It need not be a nightmare. In addition to meeting the usual parenting challenges, parents of disabled children face a gauntlet of added obstacles that can try the resolve and resources of even the strongest families. But navigating the complex
medical, educational, occupational, and social issues can be made easier with the right information.

Wednesday, January 24, 2007

The television was on this morning as I walked by to get Billy Ray’s pills. Diane Sawyer, Good Morning America was talking about a story they had done yesterday and the poll they took from viewers.

Apparently, a three year old started crying boarding an airplane. Neither of her parents were able to get her to stop. You can read the article here. Nothing was said about the little girl doing anything but crying or having special needs of any kind. The parents were instructed to make her stop and were eventually kicked off the plane because they couldn’t.

What is more shocking to me than the airlines behavior (deplorable as I find it) was the poll taken by GMA. Of 26,586 votes approximately 62% said they agreed that the family should be kicked off the plane if they couldn’t make the child quit. With this kind of intolerance is it is any wonder people with disabilities have to fight such discrimination and intolerance. What have we become as a community?

Tuesday, January 16, 2007

Friday night’s Larry King Live discussion centered around a family who had surgical and hormonal treatment for their daughter, Ashley, now 9 years old, to basically keep her as a child. She has been referred to as the “pillow angel”. Basically, if I understand it, she was given hormones to stunt her growth. Her parents will be able to lift her longer because of this procedure. Additionally she was given a hysterectomy so that she will not experience bleeding or painful cramps from menses and had her breasts removed so that they will not grow normally. Apparently, the parents believed that she would be more comfortable without experiencing menstruation and developing breasts.

A search on Google displayed over a million sites that comment on this controversy. Here are two for Times articles: Part 1 and Part 2.

I have read many of them and also had a discussion on our Yahoo group. The more I thought about it, the more I thought maybe instead of taking sides on the controversy we should be asking the question about why parents have to make such difficult decisions.

I do want to be clear that I am not advocating for this radical treatment or necessarily agreeing with it. Joni Eareckson Tada made the comment on the King show that it was alarming that this kind of treatment could set precedents. That alarms me greatly. Our history demonstrates that treatment can be universal. In the past all people with special needs be sterilized to reduce the incidence of mental retardation. Also many people were locked up in large institutions that could have functioned successfully in the community.

We have to ask ourselves if there was adequate resources and support for parents of complex children and adults would the parents have felt they needed this treatment to assure they could keep Ashley in their care for as long as possible.

Friday, January 05, 2007

January-February IEP meetings can be among the hardest for teachers and parents alike. While some IEP meetings are regularly scheduled for January or February, many occur because the program is not working and a parent has requested a special meeting.

Chances are you have experienced what I call the “dumb parent treatment” in dealing with some professional relative to your child. Here’s my description of it: